Monday, October 22, Through Sunday, October 28 - Finally, after nearly 3 weeks of rain, we actually saw the sun for the first time in quite a while. The only day that it rained this week was on Wednesday, and while the majority of the days were cloudy, there was enough sun to start drying out my yard and flower beds. I felt extraordinarily strong this week and my energy level was through the roof. I don't know if I'm anxious about getting my next injection into weeks, or if this is just pent up energy that's been building in my body since the rain started back toward the beginning of the month.
I usually go for my workouts on Thursday, but last week, Laura asked me if I would come in on Friday because she and her staff were going to be dressed up for Halloween. When I went in for my workout on Friday, Laura was dressed up as Maleficent from the Disney movie Sleeping Beauty. Laura's physical therapy assistant Emily, was dressed up as Scar from The Lion King. As you can see in the picture just to the left of my journal, my workout on Friday was a little freaky. When I got there, Laura had to perform her four-week reevaluation on me. This reevaluation involves taking multiple measurements while I do certain exercises so that she can determine whether my strength level has increased or decreased, and she can also tell if my range of motion has improved. This reevaluation normally takes about 30 or 40 minutes, so by the time we finished, we only had time to do a few of my core exercises. We worked on my abdominals and we also worked on my neck muscles. Beginning next week, Laura will transfer me out of my wheelchair back to the therapy table and we will resume our normal exercises. Along with the stretching exercises that we do for my quadriceps, hamstrings and the muscles in my calves, we will also resume the flexing exercises in my feet and toes. Laura said that she was also going to start working to improve my range of motion when I look to my left and to my right. She wants me to lay flat on my back and she will manipulate my neck to stretch these muscles so that I can improve my range of motion when I looked from side to side. Laura did mention that the swelling in my feet and my ankles had gone down considerably over the last couple of weeks, so we are both hoping that the swelling will continue to go down, which should make next week's exercises much more tolerable for me.
In this week's video, I discuss how my workout went this past week, and I also give my tips and tricks on what to do before you go in for one of your procedures. This week when I went to workout with Laura, we spent the majority of the day doing my reevaluation. Since this took the majority of the time for my workout, we only had time to do a few core exercises. Laura and her staff were all dressed up for Halloween and my work out definitely had a spooky feeling. My tips and tricks that I give before going in for one of your procedures will hopefully make this easier and less stressful for you. While these tips and tricks are my own, I believe everyone could do what I’m doing, which will help you avoid getting sick before going in for one of your injections. Click HERE to view my video.
Please checkout my Instagram site for new pictures. Click HERE to view my Instagram site.
I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you next Sunday.
Monday, October 15, Through Sunday, October 21 - What an unbelievable week this was. Four months ago, I was praying for rain. Now, I am praying for it to stop. The North Texas area has received so much rain over the past three weeks, it'll take at least three weeks for the ground to start drying up. My yard service hasn't been able to mow my yard for the last 2 weeks due to the amount of rain, so to say that my grass is eyeball high to a giraffe, would be an understatement. Overall, my week went very well. My muscle strength and my energy level is as high as it's ever been and I feel terrific.
On Thursday, I went to workout with Laura and her two physical therapy students Katherine and Lauren. This was the last week that Katherine and Lauren will be at Green Oaks Physical Therapy. For the past six weeks, they have been working side-by-side with Laura as we do all of my exercises. Watching them learn from Laura has been a great deal of fun, and having them participate and actually working hands-on with me, has been a great pleasure. Seeing their enthusiasm and their willingness to help, proves to me that they will be extremely successful physical therapists. They only have a few more rotations to go before they graduate next December, and I wish both of them nothing but the best. Katherine and Lauren, if you're reading this journal entry, thank you for all your help and good luck in your future endeavors. On Thursday, Laura, Katherine, Lauren and myself met with the ATP with the wheelchair company so that he could perform all of his measurements for my new wheelchair. He had to do this during my workout with Laura, because a physical therapist must oversee and approve everything that he does with regards to the measurements of my new wheelchair. I normally workout from 1 PM to 2 PM, but on Thursday, we spent this hour working with the ATP taking all my measurements. After this, I did my workout from 2 PM to 3 PM. After transferring me to the therapy table, Katherine and Lauren worked on all of my stretching exercises for my quadriceps and my hamstrings, and they also did all of the flexing exercises on my feet and my toes. Even though we didn't get to do an entire hour of physical therapy because of the time it took to take the measurements for my new wheelchair, we did get in a good workout, which included all of my exercises that I do for the muscles in my neck. A few of you have sent me emails asking me why I admire Laura as much as I do. What many people do not understand is that usually, physical therapists work with two or three patients at a time. They get somebody started on an exercise, then they go to another patient and work with them to get them started on another exercise, and then they float back and forth between their patients, overseeing and making sure that they're doing everything correctly. Laura spends the entire hour dedicated only to me. She can't have me start an exercise and walk away. She has to stay with me and work through the exercises with me so that I can complete each and every workout routine and exercise. I know this makes it tough on her to dedicate the entire hour to me, but she never complains and she always finds time in the week so that I can continue my therapy. Since my physical therapy will probably continue for the rest of my life, any physical therapist that works with me is going to have to do the same thing that Laura does. I hope this explains the reason why I admire Laura the way that I do, because without her, and all of her staff, I would not be able to do my physical therapy like I'm doing now.
In this week's video, I go over what happened with me during the past week, and I also share exciting news regarding Avexis pharmaceuticals. Avexis just announced this past week that they are seeking FDA approval for their drug AVXS-101. With the success of their clinical trials, they are seeking FDA approval to go from clinical trial status to an actual treatment, similar to what Biogen did with Spinraza. I share part of an email that I received regarding this topic, and I also link the entire article in the description in my video so that my subscribers and followers can go and view the entire article for themselves. I also detail the results of my appointment with my pulmonologist that occurred on Tuesday. I explained the tests that they ran on me along with my new cough assist machine that the pulmonologist is going to prescribe for me. Click HERE to view my video.
I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. I hope that you had a great week and I hope that your upcoming week is better than the previous. God bless you, and I'll see you next Sunday.
Monday, October 8, Through Sunday, October 14 - This week was one of those weeks where I wanted to trade in my minivan for a boat. Since the beginning of September, the Dallas-Fort Worth Metroplex has seen over 16 inches of rain, and this weekend, we are expected to get another 4 to 6 inches of rain, making September and the beginning of October the wettest two months that we have seen him since the early 60's. Given that we had so much rain this week, I spent the majority of my time working on YouTube videos for my personal channel along with the YouTube channel for BioNews Services, the company that I work for. As much as I love staying in and hibernating in the comfort of my home, I would really love to see the sun come out and dry a lot of this moisture up. I hadn't been able to get my yard mowed in the last two weeks because it's been so wet. Unfortunately, the forecast for the next seven days is calling for more rain and much colder temperatures.
Since I had a conference call for work scheduled for Thursday, I had rescheduled my workout with Laura for Tuesday. Sunday evening while laying in bed, the weather forecast called for heavy rains all day Tuesday, so on Monday morning I called and rescheduled my workout for Wednesday. When I went to work out on Wednesday, Laura and her physical therapy students, Katherine and Lauren, continued the same exercises that you saw in last week's video. I purchased a different slide board and brought it with me to work out. Laura's slide board was made of plastic. Even though I was wearing pants that would make it easy for me to slide in, the plastic caused quite a bit of friction, which made it very difficult for Laura to transfer me. I purchased a slide board that was made out of wood, and when we used it this past week, Laura, Katherine and Lauren found it much easier to transfer me from my wheelchair to the therapy table. Once on the table, I sat unassisted, without any support on my back or my sides, for a total of fifteen minutes. In the video that I did last week, I sat unassisted for just over five minutes, so this week was a definite improvement. After transferring me from my wheelchair to the therapy table, I found it much easier to gain my balance, and while I was sitting unassisted, I worked on leaning to my left and to my right and regaining my balance so that I could sit back up in a neutral position. While I sat there, Laura, Katherine and Lauren began sitting down next to me and then getting up, which through my balance off quite a bit. Every time that they set down, the therapy table would move just a little bit. This small amount of movement in the therapy table made it difficult for me to keep my balance, which is exactly what they were trying to do in the first place. I felt my abs firing constantly which helped keep me balanced. While sitting there, we watched the video that I produced last week and Katherine and Lauren said that they were going to use this video in their class to show the other PT students what they were doing with me in case any of them ever encountered a patient that had the SMA. I told them that they would probably be seeing more patients with SMA, given the fact that there are so many of us that are now on active treatment with Spinraza. I didn't realize that I had been sitting there fifteen minutes until after we finished watching the video, and Laura, Katherine and Lauren were all surprised at the amount of time that I was able to maintain my balance. As we were reaching the fifteen minute mark, I started to get tired and found myself starting to lose my balance. Overall, we were all quite surprised at the amount of time that I was able to stay in this upright position. After we finished watching the video, Laura and Katherine laid me down on my back and began my stretching exercises. Laura told me that my range of motion, just over the past three weeks, has improved quite significantly. While there are those that only find achievements after seeing large amounts of improvement, my achievements are measured in inches. Hearing your therapist tell you that they see significant changes can definitely put a smile on your face. I was quite proud of the fact that my range of motion had improved that much. The only difficulty that we had was when we started working on my feet and toes, flexing them back up toward my body. In last week's video, I told everyone that this was the most difficult part of my therapy so far. I received a few questions from subscribers in my email last week asking me why my feet and my toes were so sensitive. If you watched last week's video, you'll notice that I have significant swelling in my feet and my toes, and I point this out in this week's video. Laura recommended that I purchase some compression stockings. I've been hesitant in doing this because they are so difficult to get on, but Laura told me that she would put them on me when I come to work out on Thursdays, and after wearing them for 4 to 5 days, I could remove them and she would put them back on every time I come to work out. With this being said, I purchased some compression stockings and I will take them with me on Thursday when I go to work out. By getting some of the swelling out of my feet and my ankles, this will not only make this part of my physical therapy easier, it will probably make it much more tolerable as well. Next Thursday will be Katherine's and Lauren's last week to work with me. While I'm definitely going to miss the both of them, I know that they will be successful physical therapists after they finish all of their school and they pass their boards.
In this week's video, I'm giving my subscribers an update on what happened with me during this week, and I also talk about my plans for next week. On Tuesday, I'm going to see a pulmonologist. During the 2018 Annual Cure SMA conference, one of the classes that I attended spoke about how those of us with SMA can improve our lung strength. The instructors talked about the advantages of seeing a pulmonologist, so I made an appointment to go see one. This doctor is located at UT Southwestern Medical Center, the same place where I'm receiving my Spinraza injections. This pulmonologist specializes in patients with SMA, so I know that he should be aware of my disease and know some of the challenges that I am facing regarding my breathing. I'm hoping that this doctor will prescribe a cough assist machine for me which will help me expel some of the build up of phlegm and mucus that is gathering in my lungs. My recent hospitalization for pneumonia made me realize just how important getting a cough assist machine will be. When I start feeling congestion, I can use the cough assist machine to help me get rid of all of this buildup, which will hopefully keep me out of the hospital with another case of pneumonia. Click HERE to view my video.
Since I'm working full time for BioNews Services, every once in a while, I get a chance to do a podcast interview with individuals that are active within the SMA community. I interviewed Shawn Stewart during this podcast interview. Shawn had an SIC port implanted in his body. He uses this Subcutaneous Intrathecal Catheter port so that he can receive all of his Spinraza injections. During my interview, Shawn describes his SIC port in great detail and gives the listeners the advantages of having this port when it comes to receiving your Spinraza injections. Even though this is still an experimental device, more and more doctors are agreeing to implant these ports in their patients. Currently, when I go in for one of my treatments, they must transfer me from my bed to a fluoroscopy table, and they must use fluoroscopic guidance during my procedure. I also have to receive a small amount of lidocaine to numb my back before the procedure begins. With this SIC port, patients no longer need any fluoroscopic or CT guidance and they no longer need any anesthesia for the procedure itself. By using the SIC port system, the cost of the treatments will significantly go down because there is less medical procedures that are having to be performed on the patient. Click HERE to listen to my podcast interview.
I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you next Sunday.
Monday, October 1, Through Sunday, October 7 – This was probably one of the best weeks that I’ve had in a long time. It just seems that everything fell into place and nothing went wrong during the entire week. It kinda makes me wonder what next week is going to be like? Oh well, we’ll just wait and see. The weather was beautiful and I got the opportunity to go outside a few times and soak up some vitamin D.
When I went to work out with Laura on Thursday, she had her two physical therapy students with her. Lauren and Katherine worked with Laura during my workout. When I got there, Laura and her students transferred me from my wheelchair to the therapy table. Once on the table and in a comfortable position, I sat completely unassisted for five minutes. I had no side support or back support during this process. Many SMA patients are unable to sit unassisted, and by doing this during my workout, my abdominal muscles are put to the test. These muscles are constantly firing to keep me balanced and I was excited that I was able to do this without too much difficulty. After this, Laura and her students laid me down on my back and they began working on my hamstrings, quadriceps and knees. Stretching my legs and working these muscles actually feels very good. These muscles do not give me too many problems during the day, but as the day comes to a close, my hamstrings do tend to get a little tight, and so the muscles in my calves, so by working these muscles, were hoping to not only stretch them, but hopefully I won’t experience the tightness that normally happens. Also, by stretching my legs, we are also stretching the ligaments and tendons in my knees. Both of my legs have a negative degree of bend, and we are hoping that these exercises will help my legs to straighten out and to be able to lay flatter than they do now. The next exercise that we worked on involved my feet and my toes. I normally have a pretty high tolerance for pain, but you can throw my high tolerance of pain out the window when it comes to working with my feet and toes. These are the most sensitive areas on my body, probably because I don’t use them. Either way, the enjoyment that I had while stretching my legs was rudely interrupted by the pain of my feet and my toes being stretched backwards. Stretching my feet and my toes back toward my body is also painful because I have quite a bit of swelling in my ankles and my feet. The swelling is caused from not wearing feet rest while sitting in my wheelchair. I’m hopefully getting a new wheelchair in a couple of months, so I know that I’m gonna have to wear feet rest to avoid this problem in the future. If you watch my video, you’ll see the grimace on my face as Laura and her PT students work to stretch the muscles in my feet and my toes. After completing all of my stretching and my leg exercises, Laura and her students transferred me back to my wheelchair and we began working on my neck muscles with the resistance band. Since I’m still having a little difficulty with the muscle that controls my head from falling forward, Laura doesn’t use the resistance band on my neck muscle for this exercise. Instead, she places a towel in her hand and then places her hand on the back of my head and pushes my head forward. We do this for as long as I can tolerate it, but we always do at least two minutes worth of this particular exercise. Laura did make a comment that this particular neck muscle seems to be getting stronger because she said that she was having to push my head forward with a little bit more force this week than she had in my past workouts. This made me feel pretty good because I can actually feel this muscle getting a little bit stronger. After this muscle gets a little bit stronger, we will move to the resistance band for this particular portion of my neck exercises just like we do for the other neck exercises.
In this week’s video episode, I’m taking my subscribers to workout with me. Laura allowed me to take pictures while we worked on all of my stretching exercises. I put all of these pictures together in a video detailing what exercises we are doing and why we are doing these particular exercises. I’m very proud of this video because I feel I have come a long way in my physical therapy. I’m even surprised at some of the results that I’ve seen after working on the stretching exercises for only a few weeks. My video details which muscles I am working on, and it also gives a step-by-step pictorial example of each exercise. Click HERE to view my video.
Please checkout my Instagram site for new pictures. Click HERE to view my Instagram site.
I hope that all of you have had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I’ll see you next Sunday.
Monday, November 26, Through Sunday, December 2 - This was an incredibly long but productive week. While there are those that were still suffering from the effects from eating too much turkey over the Thanksgiving holiday, my work schedule kept me extremely busy. My week ended with a surprise phone call from the owner of BioNews Services. The only thing that I'm allowed to say right now is that I received a promotion, but until the announcement goes out on Monday, I can't really speak too much about what my new job responsibilities will be. I will update everyone reading my journal next week as to the details of my promotion and my new responsibilities with BioNews Services. While there was quite a bit of excitement in the air, my excitement was tempered by my overall health. It seems as if my right arm is not as strong as it was a few weeks ago, and I was hoping that this was going to be something temporary, but it doesn't seem to be getting any better. I don't know if it's my diet, my sleeping patterns or some other issue that's causing my weakness in my right arm, but I'm hopeful and praying that my strength will return back to what it was. I know that there are going to be ups and downs with regards to my treatments and how I feel, but this is the first setback that I can say that I've had since beginning my treatments. Like I said, hopefully this setback is only temporary in nature.
In last week's journal entry, I told everyone that I completed my 4 week reevaluation with Laura. While doing this reevaluation with her, we decided that we would work on my legs and my feet and my neck one week, and then the following week, we would work on core strengthening exercises. By alternating every other week, this will give me a good workout and still allow me to maintain the increase in strength with regards to my core. My workout with Laura this week was the first week since my reevaluation, so she and her physical therapy assistant, Emily, transferred me out of my chair to the therapy table. Both Emily and Laura worked on stretching my legs, focusing much of their attention on my calf muscles and ligaments in my knees. After this, they began the exercises on my feet and toes. While it's still uncomfortable to work on my feet and toes, it is beginning to be more bearable than it used to be. I don't know if I'm getting used to it or if maybe the muscles themselves are starting to loosen up and allow more flexibility, but, it doesn't seem to be as painful as it used to be. Laura was working on my left leg and Emily was working on my right leg. Laura did mention that it seems as if I'm able to get my legs straighter and flatter on the table and still be able to keep my back pressed against the table at the same time. It used to be that when they would stretch my legs out on the table, it would force my back to come up off of the table. Now when they do these exercises, I'm more conscious about trying to keep my back flat on the table and Laura said that it looks like I'm getting better range of motion in my hips and my knees. Next week, we will work on my core strengthening exercises using the resistance bands. While I normally do my workouts on Thursdays, Laura requested that I start coming in on Tuesday. She works a shorter day on Tuesdays, and she told me that I would be her only patient on that day. Along with that, Emily would be free to assist Laura during my workouts. Since this will make it easier for Laura, I will now do the majority of my workouts on Tuesdays. This is also good because getting Emily involved will take a little bit of work off of Laura. Another good thing is that Emily is used to working with me when Laura is not there, so Emily will be a great addition to my workouts. Unfortunately, I already had an appointment with my pulmonologist this coming Tuesday, so I will go on Thursday to do my workout with Laura and Emily, and I will begin my normal Tuesday schedule beginning week after next.
In this week's video, I’m going to discuss the recent results from my reevaluation on my legs, feet and neck. Every 4 weeks, Laura reevaluates me to check my progress with regards to the exercises that we’re doing. Laura and I began working on the muscles in my legs for 2 reasons. First, I wanted to stretch these muscles and ligaments in my leg to improve the strength, range of motion and flexibility. Second, due to my recent CT scan that was done that revealed damage to my right hip and leg, working on the hamstring and quadricep muscles in my legs has decreased the amount of pain that I’m going through on a day-to-day basis. We began working on the muscles in my neck to improve the rotation as I look to my left and to my right, and we are also working on the amount of side bending that I can do when I bend my head to the left or to the right. After each reevaluation, I will post these results to my website so that you can track my progress. Click HERE to view my video. Click HERE to view my test results.
I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you next Sunday.
Monday, November 19, Through Sunday, November 25 - What a great week this turned out to be. While my caregivers were going to be spending time with their family members during the Thanksgiving holiday, I had plans on staying home and watching the Dallas Cowboy game and catching up on some work that needed to be taken care of. On Monday, I received a phone call from Kristine. Most of you that have read my journal entries know that I grew up with Kristine and Kimber, and while most people would consider them neighbors, I consider them sisters. Christine asked me what I was going to be doing over Thanksgiving and I told her what my plans were. She immediately told me that she was changing my plans and that I would be spending the day with her family eating Thanksgiving dinner. I'll speak more about this in just a moment. Since completing my last maintenance dose injection for this year, back on Monday, November 12, 2018, I sent my neurologist a note asking her to send a prescription to Interventional Radiology at UT Southwestern Medical Center's William P. Clement Jr. University Hospital for all 3 of my maintenance dose injections for next year. I am scheduled to go in every March, July and November, and by sending the prescription for all 3 injections, I can then call Interventional Radiology and schedule all of my injections at one time, instead of trying to schedule them separately. NOTE: I recommend all of my subscribers and followers to do what I did. Call your neurologist or your primary care physician, and tell them to send a standing order for all 3 of your maintenance dose injections. If they just send a regular prescription, they will probably only allow you to schedule one injection at a time. By sending a standing order, this will allow you to schedule all 3 of your maintenance dose injections for next year. This way, you know that your on their schedule and it's one less thing that you have to worry about during the upcoming year.
For some reason, my right arm has been a little bit weak since my last Spinraza injection back on Monday, November 12. I'm not sure if it's just a natural occurrence or if I'm not getting enough protein in my diet. I've been so busy the past couple of weeks, that my diet has not been exactly what it should have been, so I'm hoping that after eating enough protein and changing my diet, I can regain some of the strength. It's not to the point to where I'm scared that something's gone wrong, it's just concerning because up until about a week before my injection, my right arm had been so much stronger. I try to remain on the positive side of everything in my life and I'm sure that my arm will increase in strength over the next week or two.
Kristine and her husband Marty invited me to their house to be with their family during the Thanksgiving holidays. When you grow up with 2 special people like I did, you sometimes forget how blessed you really are. You never realize how much of an impact these individuals will have in your life until you get older. I never thought that we would ever be in contact with each other whenever I was growing up because I knew that friends would come and go in my life. Fortunately for me, these friends Kristine, Kimber and their parents Larry & Carol, would be those friends that would turn into family and that would remain in my life. While we may have had our issues from time to time growing up, we were never more than a phone call away and when we did reunite, the bond that was formed will never again be broken. Their parents were my 2nd set of parents while growing up. I spent as much time in there house as I did in mine, and vice versa. Kristine and Kimber were always at my house and we were always together, especially during the summer months when we were out of school. I took time to reflect on what was special in my life during this Thanksgiving holiday and if I was to list them all, this journal entry would be never ending. First and foremost, I am thankful for my family and friends and those who helped to take care of me on a daily basis, for without them, I don't know where I would be. I'm thankful for being given the opportunity to take my Spinraza treatments, for without Biogen putting me on their free drug program, I would be a spectator instead of the participant. I'm thankful that I found a great physical therapist, Laura. Her encouragement and her willingness to help me, has forever changed my life. She, along with her group of wonderful therapists and assistants have allowed me to experience much more in life than just physical therapy. They allow me an opportunity to get out of the house and to be around great people along with doing something for my body that I know will benefit me as I get older.
A Special Message To Those Who I Mentioned:
To my caregivers: Thank you for allowing me to stay in my house and to have such a wonderful experience as I grow older. Many people in my condition are stuck in nursing homes or group homes, but since you came into my life, I know that this will never happen to me. Your love for me means the world to me and I hope that you know how much I love you.
To Christine, Kimber, Larry & Carol: Thank you for not only being my neighbors, thank you for being my second family. Thank you for coming back in my life and please know that the amount of love that I have for you cannot be measured by feet and inches. LYTTMAB
To Laura: Thank you for helping me to experience more than just muscle growth. Thank you for changing my life and giving me another reason to continue in this journey that I call my life. You could've easily told me that you didn't have time to work with me when I was trying to find a physical therapist, but you took the time to not only learn about Spinal Muscular Atrophy, you also took the time to learn about me. Instead of working with multiple patients at a time, you spend the entire hour dedicated to my health and my improvement, and while this may not seem to be a big sacrifice to you, please know how much I appreciate you taking the time out of your day to allow me to grow stronger both physically and mentally. You and your group of therapists and assistants have forever changed my life and I'm excited about what the future holds for me, thanks to all of your hard work.
When I went to workout with Laura this week, it was time for my 4 week reevaluation. Since this process takes the majority of the hour that I had to do my workouts, Laura doesn't transfer me to the physical therapy table to work on my legs. Instead, we focus on taking all my strength tests and measurements to see how much improvement has occurred during the past 4 weeks. Overall, my test results showed improvement. My ability to bend forward and come back into a seated position improved by a few degrees and my ability to lean to my left and right and being able to come back into a seated position also improved by a few degrees. Unfortunately, my core strength seemed to be a little bit weaker this past reevaluation. After discussing this with Laura, she told me that I'm probably a little bit weaker in my core strength due to the fact that we've been spending so much time working on my legs. While this wasn't a dramatic loss of strength, it's still something that concerns me. Laura and I decided that what we would do would be to spend one week working on my legs and trying to improve my range of motion and flexibility, and we would spend the following week working on core exercises such as my abdominal and back muscles. Since next week will be week one in the four week session, we're going to start out working on my legs. The second week will be dedicated to my core strength, and the third week will be dedicated to my legs. This is a great schedule because every 4 weeks, we will end on working my core strength which will coincide with my reevaluation. Since the reevaluation only takes about 30 minutes, we can then dedicate the rest of my time during this workout on my core muscles. The exercises that we will be focusing on during my core workout will be my crunches and my reverse crunches. My crunches involved Laura sitting behind me with the resistance band around my chest. After leaning forward, she will then apply resistance pulling me back toward the back rest of my chair. I will then lean forward against the resistance that she's applying with the resistance band, forcing my abdominal muscles to work as I lean forward. During the reverse crunches, Laura will sit in front of me with the resistance band around my back. She will then apply enough resistance with the resistance band to force me to lean forward in my chair, and my job is to lean back and put my back against the back rest of my chair. We do 3 sets of 30 reps for both the crunches and the reverse crunches. These exercises definitely work the abdominal and back muscles and they also work the muscles in my neck. These exercises will also improve my balance while sitting in my wheelchair. I have added a new section to my Test Results page on my website. This new section will show my leg, foot and neck flexation results that we get during my reevaluation. Unfortunately, I did not record the measurements when we did the reevaluation last week, but I will get these results when I go back this week and will add these results to my website next week. Click HERE if you would like to view these results.
In this week's video, I’m going to answer a question that’s been floating around the SMA community and the medical community for nearly 2 years. When Biogen’s drug Spinraza became the first FDA approved treatment for Spinal Muscular Atrophy, there was quite a bit of chatter as to whether or not this was going to be considered a treatment or a cure. When I decided that I wanted to go through the Spinraza injections, early in 2017, I began researching Spinraza over the Internet. I wanted to know what it was and what it was going to do for me. In my search, I found a YouTube video of an interview that a local television station did in Arizona. They interviewed a young man by the name of Noah Spencer. Toward the end of the video, Noah made a statement that completely threw me off guard. He stated that doctors told him that after he was on this treatment for a given amount of time, that he would be able to get up and walk on his own. In the video that you’re about to watch, I copied a small portion of Noah’s interview and included it, so that you could hear exactly what he said, and I then give my interpretation regarding this controversial video. Click HERE to view my video.
I hope that all of you who are reading my journal entry this week had a wonderful Thanksgiving. I hope you had an opportunity to spend it with family and friends, and I ask that you take a moment to think about the things in your life that you are thankful for and remember to be thankful for each of these wonderful gifts each and every day of your life. God Bless you, and I'll see you next Sunday.
Monday, November 12, Through Sunday, November 18 - With everything that I had to do this week, and even though my plate may have been full, this week flew by like clockwork and everything fell in its place. I currently manage five different rare disease forums for BioNews Services, and we decided this week, that we would add another 4 forums to the ones that we already have. Currently, we have forums for Spinal Muscular Atrophy, Multiple Sclerosis, Parkinson's Disease, Pulmonary Hypertension and Pulmonary Fibrosis. Beginning in January 2019, we are adding Cystic Fibrosis, Muscular Dystrophy, Friedreich's Ataxia and Lou Gehrig's Disease, otherwise known as ALS. With the addition of these 4 forums, BioNews Services will have one of the best run community information discussion boards that I've ever seen. Working with this company has given me an opportunity to not only work with some great people, it's also allowed me the opportunity to broaden my knowledge with respect to these individual rare diseases. Even though my job responsibilities are growing exponentially each and every day, I count my blessings that I've been given a chance to be the Forums Director for this great company. Along with everything that is happening with my job, I received my 3rd maintenance dose injection of Spinraza at U.T. Southwestern Medical Center's William P. Clements University Hospital on Monday, November 12. To say that my week is been busy, would be an understatement.
When I woke up on Monday morning, I could tell that my body was craving the Spinraza that it was about to receive. Waiting 4 months in between treatments can sometimes be a challenge, because I think I can honestly feel that my body is needing this injection as the dates get closer. It's not that I become dramatically weaker, but I can tell a slight decline in my energy level and my strength. When I got to the hospital at about 11 AM CST, they took me back to my room and began doing all of the pre-testing that they normally do. After taking a urine sample and doing all of the blood work necessary, I laid in bed until 1:30 PM. Earlier, I had met the student doctor who was scheduled to perform my procedure. He came into my room and introduced himself to me and we went over the procedure. I know the doctors are supposed to tell me exactly what's going to happen, but after going through as many injections as I have, it's almost like listening to a recorder. After he finished telling me what was going to happen during the procedure, he left my room and shortly after, the technician came into my room and took me to the fluoroscopy suite. After the technician and a couple of nurses transferred me from my bed to the fluoroscopy table and got be properly positioned, Dr. Stehl came into the room. Dr. Stehl had been the doctor that had overseen my first two maintenance dose injections back in March and July of this year. Even though his students were the ones who performed my procedures, Dr. Stehl was the attending physician and he supervised everything that was happening to make sure that everything was being done properly. When Dr. Stehl came into the fluoroscopy suite, he told me that his student doctor was not going to be able to perform my procedure because he had been called away to handle another medical situation that had come up. Dr. Stehl told me that he would be doing my procedure, which was fine with me. After taking a few fluoroscopic images of my back, Dr. Stehl marked my back with a pen and began the procedure. After numbing my back with a shot of lidocaine, Dr. Stehl inserted the needle directly into my central nervous system without any difficulties. He immediately began receiving cerebral spinal fluid (CSF), and withdrew approximately 5 mL of CSF out of my back. After removing 5 mL of CSF, he then instructed the nurse to bring him the vial of Spinraza and he loaded the syringe with 5 mL of Spinraza. After this, Dr. Stehl injected the Spinraza into my central nervous system and after the injection was done, he removed the needle and put a Band-Aid on my back. The technician and the nurses then transferred me from the fluoroscopy table back to my bed and the technician took me back to my room where I was to lay flat on my back for one hour. After an hour of laying on my back, the nurses came into the room and transferred me from my bed to my wheelchair and I was allowed to go home. Since I had experienced migraine headaches and nausea during my first two maintenance dose injections, I went by Starbucks and bought a large cup of coffee and drink that immediately after I left the hospital. This dose of caffeine kept me from getting a headache during the day and I experienced no postsurgical pain in my back. Other than a nerve that they hit during my first maintenance dose injection in March earlier this year, each of my maintenance dose injections have run smoothly and we have had no complications.
On Thursday, when I went to workout, Laura was on vacation, so her physical therapy assistant, (PTA), Emily and Emily's student physical therapist, Kylie worked out with me. Emily and Kylie transferred me for my wheelchair to the therapy table and we did all of the exercises on my hamstrings, quadriceps, muscles in my calves and all of my stretching exercises in my ankles, feet and toes. Even though my feet and my toes are extremely sensitive, I'm slowly getting used to these workouts and I'm finding that it's not as uncomfortable as it used to be when we began over a month ago. I am in no way saying that these exercises are a cakewalk, but I am thankful that they are becoming more bearable as time goes on. After working on my legs, Emily began working the muscles in my neck. Emily placed the palms of her hands under my head with her fingers stretched out to where they reached the middle part of my neck and she began manipulating these muscles to loosen them up. Once these muscles were loose, she then began rotating my neck from side to side working on the range of motion with regards to the rotation of my head. We then worked on side bending which improves the way that I can bend my head toward my shoulders from left to right. These exercises are not painful at all. As a matter of fact, after we finish doing these exercises, my neck feels better for the entire day. After we finished the exercises in my neck, Emily and Kylie transferred me back from the therapy table to my wheelchair and Emily and I finished my exercises by using the resistance band on my neck. As I said in earlier journal entries, the muscle that controls my head from falling forward is the weakest muscle in my neck. We are now using the green resistance band on all of my neck exercises and I feel that my neck is getting stronger each and every week. Laura will return next week and since Thanksgiving is on Thursday, I am scheduled to go back on Tuesday for my next workout session with Laura.
In this week's video, I discuss my 3rd maintenance dose injection of Spinraza that occurred on Monday, November 12. I explain exactly what they did to me and for me while at the hospital for my procedure and I go into great detail about exactly what happened during the procedure itself. I also explain the topic that I will be discussing next week in my weekly video. There are 2 words floating around the SMA community that are causing a lot of controversy for those of us going through our procedures. I tell everyone that I'm going to define the differences between the word "cure", and the word "treatment", and I explain how I'm going to define these words so that those of us going through our procedures will all be on the same page. Click HERE to view my video.
I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. Thank you to all of those who said a prayer for me during my last procedure. God bless you and I'll see you next Sunday.
Monday, November 5, Through Sunday, November 11 - This has been one of those exceptionally busy weeks, where even if I had 36 hours in a day, I wouldn't have enough time to get everything done. Since I'm going back to the hospital this coming Monday, November 12, I've been hibernating and trying to stay away from everyone. I do this because if I go to the hospital with even a common cold or a sore throat, they may not do my procedure, so staying away from everyone assures me that I have the best opportunity to go to the hospital in as good a shape as possible. The only time that I ventured out of the house this entire week was when I went to workout on Wednesday with Laura.
I wanted to try to dedicate the last four days of the week so I could be by myself as much as possible, so I scheduled my workout for Wednesday of this week. When I got to Green Oaks Physical Therapy, Laura immediately transferred me out of my wheelchair to the therapy table and we began my exercises on my hamstrings, quadriceps, calf muscles, ankles and my feet and toes. Since doing these exercises consistently for the past three weeks, my hip has felt better than it has in a long time. Two weeks ago when I did my workout with Laura, my toes were pretty sensitive on my right foot for a few days afterwards. When I went in on Wednesday, Laura focused more of her attention on flexing my feet more than she did my toes, which was a big relief to me. After completing all my exercises regarding my legs and my feet, Laura began a new exercise on the muscles in my neck. Laura's working on the muscles in my neck so that we can improve the range of motion as I looked to my left and to my right sides. Laura will place the palms of her hands behind my head with her fingers extended until they reached the middle part of my neck. She will then begin manipulating these muscles with her fingers so that she can loosen the muscles to help as she rotates my neck to the left into the right. In physical therapy, therapists measure the number of degrees of rotation you can turn your head to the left and to the right, and the number of degrees that you can bend your neck from side to side. Currently, I have 12° of rotation and 25° of side bending when looking to my right, and 28° of rotation and 25° of side bending when looking to my left. Click HERE to view some of the pictures that we took as Laura was working on the muscles in my neck. After manipulating these muscles with her fingers to try to get them to relax, Laura will then rotate my head to one side and then gently hold pressure on my head, keeping it rotated as far as possible. She will then rotate my head to the other side and gently hold pressure, keeping it rotated as far as possible. We're hoping that these exercises will allow me to increase my range of motion while looking to my left and to my right and it will also give me the ability to bend my head further from side to side. After finishing the exercises on the muscles in my neck, Laura then transferred me back to my wheelchair and we began the resistance band training on the muscles in my neck. These exercises are progressing each week. A few weeks ago, Laura was having to manually push my head forward with the palm of her hand because the muscles that control my head from falling forward were not as strong as the muscles that I had keeping my head from going backwards and from side to side. Now, instead of using the palm of her hand to push my head forward, Laura is now using the resistance band for this exercise as well. We're going to continue working on my legs and my neck for another month or so, then we will go back and work on the core muscles for a few months.
In this week's video, I’m going to discuss my 3rd maintenance dose injection of Spinraza, scheduled for Monday, November 12, 2018. I’m going to be giving details as to how I prepare for the procedure, and also discuss the typical routine that I go through with each injection. After this, I’m going to show a brief one minute video that I created from the pictures that we took when I went in for my workout this past week. Laura is working on the muscles in my neck to not only improve the range of motion with regards to rotation in my neck, she’s also working on improving the amount that I can bend my head from side to side. I also review my results from my previous reevaluation that was done on September 30. The numbers that I give in this video regarding the rotation and side bending motions in my neck should improve over the course of time, as we loosen these muscles to allow me better rotation. Click HERE to view my video.
I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week it will make you a better person. Please say a prayer that my upcoming Spinraza injection goes well. God bless you and I'll see you next Sunday.
Monday, October 29, Through Sunday, November 4 - Even though we've seen a little bit of inclement weather over the past few days, this week has been dry enough for me to get out of the house and run some errands without getting soaking wet. Now that summer has finally come to an end, temperatures are starting to settle into more of a fall like atmosphere. Instead of it being over 100°, our highs during the day are now in the upper 70s to low 80s, with occasional 50s and 60s. When I was younger, I never liked cold temperatures during winter, but, as I've gotten older, I'm finding that wintertime is becoming more enjoyable. My poor little air conditioning units run constantly during the summer, so hearing these turn off and not being used for a few days in a row is very nice.
Last week, when I went to work out with Laura, she asked me to come in on Friday because they were getting dressed up for Halloween. This week, due to a conflict in my schedule, I went to work out on Tuesday instead of Thursday. When I got there, Laura and her physical therapy assistant Emily, transferred me from my wheelchair to the therapy table and began the exercises on my legs and my feet. Since it'd been a couple of weeks since we had exercised my legs and feet, this particular work out was very uncomfortable to go through. I found myself cringing in pain more than I ever had, especially when Laura and Emily started working on my feet and toes. While this has always been an uncomfortable exercise to go through, this week seemed to be a little worse. I know that these exercises on my feet and toes are what I need to go through, but it still doesn't make it any more pleasurable. My left foot felt fine after work out, but my toes on my right foot, especially the fourth and fifth toe, seem to be somewhat tender all the way through Sunday. I'm not sure if Laura was pressing this side of my foot harder than she had in the past, but it felt like I had maybe pulled a muscle in these toes, and this tenderness persisted for a few days. Any time that you are trying to build muscle or if you are working on muscles, you tend to tear these muscles down so that they can rebuild. I'm not sure if this is what's happening with my toes, especially given the amount of tenderness that I felt for a few days after working out, but I'm hoping that these workouts will become more bearable as time goes on. I apologized to Laura for whining so much, and she just looked at me and told me that she thought that this work out would be a little bit more intense since it had been a few weeks since we had worked on these muscles. After working on my feet and my toes, Laura and Emily focused on my knees and the muscles in my calves. With my feet flat on the therapy table, they pressed down on my knees which not only exercised my ankles and my feet, it also worked on the muscles in my calves. After this, Laura began working on improving the range of motion in my neck. This is a new exercise that we're doing because I want to be able to look further to my left and to my right, and by stretching these muscles and working these muscles, Laura hopes to give me more range of motion. While laying flat on my back, Laura stood behind me and started manipulating my neck with her fingers and her hands. She slowly twisted my neck from side to side checking to see what kind of range of motion I had to begin with. She then took measurements, with the help of Emily, so that we can have some baseline numbers to go by in a few weeks to check to see if my range of motion had improved. After massaging the muscles in my neck and taking all of her measurements, Laura and Emily transferred me back to my wheelchair. Once back in my chair, Laura took the measurements of my ankles and my knees so that she could record these numbers like she did the measurements that she took on my neck. Next week, I will report these baseline numbers in my journal so that we can track any improvement that occurs in the coming weeks.
In this week's video, I answer two very important questions that my subscribers sent to my email. The first question involved whether or not those of us that are on active treatment with Spinraza will be able to take the Avexis drug, AVXS-101, if and when it gets passed by the FDA to become a treatment similar to Spinraza. The second question asked why AVXS-101 was only going to be available for infants with Type I SMA. They wanted to know if AVXS-101 was going to be available for those of us with SMA Type II and Type III in the future. After answering these questions, I give an update with regards to my physical therapy with Laura, and I also detail my plans for the upcoming week. Click HERE to view my video.
I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you next Sunday.
Monday, December 24, Through Sunday, December 30 - It seems funny that the days leading up to Christmas seem to go by so quickly. One minute you're frantically running around shopping for the last-minute gifts, then, what took you days and even weeks to find, are opened up in just a matter of minutes. While I got some nice gifts for Christmas, spending time with family and friends means far more to me then any gift that I had to unwrap. Being around people who have known you all of your life and that truly understand who you are, is a feeling that cannot be replicated or duplicated in any way shape or form.
In my video last week, I said that I was going to take a week off so that I could relax and spend time with family and friends during the Christmas holiday season. With this being said, and while I'm not going to be doing a video for Sunday, December 30, I did want to update my journal so that those of you that do read it, can keep up with what's happening in my life. My job with BioNews Services is definitely keeping me busy, and now that I'm their Multimedia Director, along with being their Forums Director, my plate is definitely full, but I love every minute of it. I'm using this time to record some podcasts and some Flash Briefings so that I can have them ready to go in preparation for 2019. For a long time, I tried finding a job where I could work from home and make enough money so that I could not only plan for the future, but also take care of some important needs that needed to be taking care of in my life. By the grace of God, I began working for BioNews Services, and this company has not only taken care of me, they've removed the weights on my shoulders that I was feeling with regards to some of the financial decisions that I had to make. To say that I'm a lucky guy would be an understatement, and I'm trying to not only give them a quality product, I'm getting to use some of the managerial techniques that I learned in college. The most important managerial technique that I use is to treat others as I would have them treat myself. Working for large companies, throughout my career, I learned more from managers who had no idea how to manage. I saw how they treated their employees, as if they were nothing more than chattel, and by learning from their mistakes, hopefully, I bring a managerial technique that others will not only respond to, but also look up to. I'm not saying that I'm the best person in the world, because God knows that I do have many faults, but I have found that if you treat people with respect, you will also receive respect.
I normally do all my workouts with Laura on Tuesdays, but this week and next week, I'm going to do my workouts with her on Thursdays due to the Christmas and New Year's schedule. When I went to do my workout with Laura on Thursday, she transferred me out of my chair and onto the therapy table with the assistance of her physical therapy assistant, Emily. The first thing that I did, was sit on the edge of the therapy table with my feet supported for about 15 minutes. The week before last, while sitting unassisted, Laura began shaking the table testing my balance. This went really well, so this week, Laura sat behind me and started pushing me forward, backward and to my left and right testing my balance. By Laura sitting behind me, I had no idea what she was going to do, so this really tested my abdominal muscles and my balance. She would push me forward with her hands, all while being close enough to catch me if I lost my balance. Pushing me forward and to my left and right were not as difficult as I thought, but when she would pull me backwards, toward her, this really tested the muscles in my back, neck and abdominals. Overall, I did pretty well. I only lost my balance a few times, but we were both pleased with the results. After working on my balance, Laura and Emily laid me down on my back and we began working on the range of motion and flexing exercises on my legs, knees and ankles. Laura mentioned that the swelling in my ankles was not as severe this week as it was last week, so she was able to flex my feet back up toward my body at a greater degree than she did during my reevaluation. After doing this, she remeasured the amount of negative degrees in my ankles and my results were slightly better this week than they were last week. We did find out that the negative degree bend in my legs were not as good with me laying down as they were with me sitting up in my wheelchair. She did this just to get an idea on my flexibility, and we should know more in three weeks when I go through my next reevaluation. The only problem that I encountered this week was in the muscle in my neck. After doing a few neck exercises in bed one evening, I noticed that the muscles in my neck were extremely weak. This weakness persisted for about four days, and I was starting to get concerned that my neck muscle was actually getting weaker. On Thursday morning, when I woke up, the muscle in my neck was back to normal. Another reason why I became quite concerned about my neck muscle, was that on Wednesday, I went to Best Buy to purchase new speakers for my computer. After rolling down the ramp in my van, the sidewalk was angled to the left, and I wasn't expecting this degree of tilt. I felt my body leaning to the left, so to correct this, I turned sharply to the left thinking that it would throw my body back into my wheelchair so that I could regain my balance. Unfortunately, this didn't work and if it wasn't for my seatbelt, I would've fallen out of my wheelchair. Luckily, my caregiver was only about 15 seconds away from me, and he quickly came over and pushed me back into a seated position. Wednesday was a very depressing day for me because with all of the improvements that I made during my physical therapy, having an incident like this happen to me, really jarred my enthusiasm. When I told Laura about what happened to me, she told me that I probably overworked this muscle while doing these exercises while laying in bed and that the muscle just needed to rest. Like I said earlier in my journal entry, the muscle in my neck regained all of its strength on Thursday, and I felt fine for the rest of the week. I always preach about keeping a smile on your face and having a positive attitude, but this really tested me and I found it difficult to take the advice that I've been giving to each and every one of you. Thursday was one of those days that rejuvenated my enthusiasm, and I now know that I'm going to hit bumps in the road along the way and I just have to understand that this is just going to be a part of my life that I have to deal with.
While I didn't post a video this week, I did upload two new podcasts to my SoundCloud account.
Podcast #15 - in this podcast, I discussed whether or not Spinraza should be considered a cure or a treatment. The word cure is being tossed around regarding Biogen's drug Spinraza. In my opinion, this word is being passed around to quickly and to easily, and those of us that are on active treatment with Spinraza, need to understand the differences between these two words, In my podcast, I give my opinion as to what I believe Spinraza should be considered. Click HERE to listen to this podcast.
Podcast #16 - in this podcast, I discussed a topic that is very important in my life. While I never try to preach my Christianity to any of my subscribers or followers, my belief in God is a subject that I'm not afraid to talk about. Growing up in a Christian household, taught me the importance of my faith and while I don't necessarily talk about it on my YouTube channel or my other social media and multimedia accounts, it's still a subject that I put first in my life. I had something that happened to me not too long ago that caused me to think about my faith, and I wanted to share this story with you so that you could fully understand why I believe in God and his son, my Lord and Savior Jesus Christ. This podcast is not meant to push my religion on anybody that decides to listen to it, but please understand that my faith will always come first in my life and that everything else must take a backseat with regards to importance. Click HERE to listen to this podcast
I hope that each and every one of you that are reading my journal had a Merry Christmas. I hope that 2019 brings you and your family great love, prosperity and faith. My next video will be available on Sunday, January 6, and I look forward to bringing all of you positive news and great hope for the upcoming year. God bless each and every one of you and I'll see you in 2019.
Monday, December 17, Through Sunday, December 23 - I can only speak for myself, but 2018 seemed to fly by at the blink of an eye. This year has been filled with 95% joy, 2% heartache, 2% frustration and 1% of total confusion. I would say that I had a pretty good year, and I'm hoping that those of you that are following me on my YouTube channel and reading my weekly journal entries had just as good of a year or better.
I told you that I had 2% of frustration during this year, and it all fell on Tuesday, when I went for my workout with Laura. Every four weeks, Laura has to reevaluate me to check my progress. She checks the muscle strength regarding my core strengthening exercises that we are doing, and she also takes measurements with regards to my range of motion and flexibility in my legs, knees, ankles and feet. This past Tuesday, was reevaluation day, and I can say that it was probably the most frustrating day that I have spent while working out. While I remained about the same with regards to my core strength, the flexibility in my ankles actually decreased quite significantly during the past month. It's kinda like getting kicked in the teeth when your therapist tells you that you actually decreased instead of increased during the reevaluation. The flexibility and range of motion in my legs decreased slightly, but not really enough to concern either Laura or myself. She said that this would happen from time to time and she said not to really worry about those results. The results that caused the concern was when she was flexing my feet in an upward position. In my video, I state that we are trying to get my legs and my feet as close to 0° as possible, but the numbers that we got while checking my ankles and feet decreased quite a bit. While doing these measurements, Laura stated that my ankles seem to be significantly more swollen this reevaluation compared to the previous evaluations. As soon as she said that, I knew exactly who to blame. While I would love to be able to blame someone other than myself, I knew that this would not be a possibility. A few months ago, my internist prescribed hydrochlorothiazide, which is used to decrease swelling. I'm supposed to be taking one pill each day to control the swelling in my ankles, but due to me being bullheaded, I haven't been taking these pills like I should've been. Laura said that the swelling was keeping her from flexing my feet as much as she should've been able to do, so my numbers were definitely skewed. Since I have no one else to blame but myself, I know what I need to do to improve the numbers for next month's reevaluation. I will be taking my hydrochlorothiazide every day and while I don't necessarily enjoy the fact that I have to pee every two hours after taking these pills, the decrease in swelling will definitely help get my numbers back toward the normal range. Click HERE to see my test results. For the next two weeks, I will be going to my workouts on Thursday, due to the Christmas and New Year's holiday which fall on Tuesdays. Next week, when I go in for my workout with Laura, she will be transferring me out of my wheelchair onto the therapy table so that we can begin another round of range of motion exercises on my legs, knees, ankles and feet. Click HERE to view the pictures that Laura's physical therapy assistant, Emily, took while we went through this reevaluation process. In two of the pictures, you can see the painful expressions that I made while Laura was measuring the amount of degrees that she can flex my ankles and my feet. In the picture were Laura is sitting to my left and flexing my left ankle and foot, you can tell by the position of my mouth as to what word I was about to yell out. If you need a clue as to what word I was about to scream, the word starts with the letter F, and rhymes with Tuck. If you need any further clues, please talk to your parents and have them explain the concept behind the birds and the bees.
In this week's video, I’m going to go over the results that Laura and I got during my four week reevaluation process. Every four weeks, Laura has to reevaluate my progress regarding the core strengthening exercises that we are doing, along with all of the measurements regarding my leg, foot, knee and ankle exercises. This past week when I went in for my workout with Laura, this was reevaluation day. During this process, Laura is physical therapy assistant, Emily, took pictures, and I put these pictures to 3 short videos about 50seconds of each so that you can see exactly what happens. To be honest with you, I was extremely disappointed in the results that we got last week, and in this video, I detail exactly why we got the results that we did, and my plans on what needs to happen to improve these results before next month’s reevaluation. I would love to be able to blame someone else for the negative results that I got during my past reevaluation, but the only person that I can blame is myself. Click HERE to view my video. This will be my last video until Sunday, January 6. I’m going to take next week off so that I can be with family and friends during the Christmas holiday period. I wish all of my subscribers and followers, and their family members, a Merry Christmas and a happy new year. Thank you for supporting me in 2018, and I look forward to bringing you more videos in 2019, that will hopefully give you some good information regarding my journey, and spinal muscular atrophy.
I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you, and I'll see you in 2019.
Monday, December 10, Through Sunday, December 16 - Another week flew by, and for the life of me, I don't know where it went. Changing my physical therapy workouts from Thursdays to Tuesdays has thrown my schedule off, and I'm having to readjust what I do during the week because after keeping my Thursday schedule for nearly a year, it's going to take me some time to get use to my new schedule. Being nearly 54 years old, I get into a routine and I'm finding it harder and harder to break a routine as I get older. I'll eventually get used to it, but even the smallest of changes can throw me off my game.
If you read my journal entry last week, I told you that my physical therapist, Laura, asked me to start coming in on Tuesdays because this is her short day, and I would be her only patient. Along with being her only patient, her physical therapy assistant, Emily, would be available to help in my workouts and it would also make it a little easier for Laura. Since Laura spends the entire hour with me, and me alone, having another therapist to help her will make it easier, especially when it comes to transferring me from my wheelchair to the table and then from the table back to my wheelchair. When I went for my workout this week with Laura on Tuesday, Emily helped transfer me from my chair to the physical therapy table and we began my exercises. Since they were a little busy this past Tuesday, due to the upcoming holidays, Emily worked with other patients and Laura worked with me. After transferring to the physical therapy table, I had to sit unassisted for 20 minutes without any support on my back or my sides. Now that I can keep my balance relatively well, Laura has began a strange new exercise with me. While sitting behind me so I can't see her, and while Emily stands in front of me, Laura will begin shaking the table, testing my ability to keep my balance. I told her it would make it much easier for me if she sat in front of me where I could see her, and she just laughed and said "good try". Not knowing when she's going to shake the table or how hard she is going to shake the table, causes me to always be alert. When we first began this exercise, Laura would shake the table lightly, but now, it feels like a 7.0 earthquake. The only time that I lost my balance and began to fall backwards was when she came up from behind me and placed her knee directly behind where I was sitting, forcing the table to lean backwards. This sudden change in the table was a little too much for me to handle, but Laura was there to stop me from falling. It still took me a little while to swallow my heart, but I bet if you were to check my blood pressure when she did that, it would have been off of the charts. In the 20 minutes that we did this exercise, I only lost my balance once, so I felt pretty good about my results. I asked Laura if she was surprised by my results and she told me that she really wasn't too surprised. She had a feeling that I could do it, but she did say that I did surprisingly well. She said that we will continue this exercise each time that I'm sitting unassisted, and she told me that it will get easier as time goes on. After finishing my balance exercises, Laura and Emily laid me down on my back and Laura began by stretching out my legs and working on my range of motion in my hips. A few weeks ago when we did these exercises, I felt a little sore in my left knee, and the soreness persisted for over a week. On Tuesday, Laura placed her hand a little above my knee when stretching my legs in this worked much better. Laura mentioned that my legs seem to be getting better because she said that my muscles in my legs don't feel as tight as theydid when we began working on my legs. She even mentioned that my left leg is stretching and straightening out, almost to the level of my right leg. Hearing your therapist tell you that you're showing progress is exciting, and you couldn't of wipe the smile off my face with a chisel and hammer. I was a little sore in my right hip when I went in for my workout, but after finishing my exercises with Laura, and after transferring back into my chair, my hip felt great. It started to get a little tender toward the end of the day before I went to bed, but the next day, everything was fine. During my workout, Laura also worked on the tendons and ligaments in my knees along with flexing my ankles and toes. The numbness and pain that I had experienced in my right leg due to the damage that was shown on the CT has virtually disappeared. While I still get sore from time to time, I'm having more good days than bad.
In this week's video, I give a cost comparison between Biogen’s drug Spinraza and Avexis’s drug ZOLGENSMA. Even before the potential approval by the FDA for ZOLGENSMA, there are already numerous Internet articles talking about the price of this potential one time injection. When Biogen introduced Spinraza in late 2017, the media focused on the cost of this therapy versus the benefits that it would have for those of us with SMA. The same thing is happening with ZOLGENSMA, and I wanted to do a cost comparison to show my subscribers and followers how to address this particular issue. Along with my advice, I give you my perspectives on what I think regarding this issue, along with words of encouragement. Click HERE to view my video.
I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you next Sunday.
Monday, December 3, Through Sunday, December 9 - This was a long, stressful, somewhat arduous week. I had to change my workout with Laura from Tuesday to Thursday because I had to go to my pulmonologist on Tuesday to visit with his pulmonary nurse. This small change in my schedule seem to throw everything off and this week just didn't feel right. I'm not saying that anything went wrong, it just seems funny to me how such an insignificant change can alter how you feel throughout the week. It could be that I'm overthinking this, but then again, it may not be. (Dammit, I think I'm overthinking it.)
When I went to see my pulmonologist's respiratory nurse on Tuesday, I took my new cough assist machine with me so that she could set everything up and show me exactly how she wanted me to use it. When the representative from the healthcare store came out to my house to deliver it to me, he set it up with the specifics that they received from the doctor, but Katherine, the respiratory nurse, had me go through a few treatments with the machine and she reset some of the numbers to make these treatments more effective and beneficial. The inhale portion of the exercise forces air into my lungs and my job is to relax and take as deep of a breath as possible. This goes on for a total of 5 seconds, and then I get to rest for the next 5 seconds until the next cycle begins. The first time that I tried this when they brought the machine to my house, this was somewhat painful to do because I didn't know how to do it properly. Katherine taught me the proper way to do this exercise and after doing a few cycles with her watching, I can tell you that the inhale therapy that this cough assist is giving me is going to really help expand my long strength and capacity. After doing a few of these therapy cycles in front of Katherine, I could tell that I could take a deeper breath, and it really felt good. I will continue to use this on a daily basis as instructed by Katherine until I go back in for my next appointment in April. Katherine also set up the cough assist portion and took me through a few cycles. She told me that they did not want me to use the cough assist on a daily basis. She told me to only use the cough assist whenever I felt I was getting congested or if I felt that I was having trouble coughing up some of the phlegm and mucus that was collected in my lungs. So far, I have not had to use the cough assist, but when I start feeling congested, I will definitely use it. She told me that if I do have to use the cough assist, to be sure to end my therapy with a couple of sessions of just the inhale portion so that I can make sure that my lungs are expanded as far as possible.
Since I had to go to my pulmonologist's office on Tuesday, I had to change my workout with Laura to Thursday. If you remember in last week's journal entry, I told you that Laura wanted me to start coming on Tuesdays instead of Thursdays because her Physical Therapy Assistant, Emily, would be available on Tuesday to work with her during my exercises. Since I wasn't going to transfer to the therapy table this week, changing my schedule to Thursday wasn't really a big deal. When I got there, Laura and I began working on my core muscles using the resistance bands. I worked on my crunches, reverse crunches and side bending exercises using the resistance band. We then worked on my isometric exercise where Laura puts the resistance band around my back and tries to pull me forward. My job is to keep my back against the back rest of my wheelchair. This isometric exercise really works my back and abdominal muscles, and we do this for a total of 2 minutes. Trust me, after 2 minutes, my abdominal muscles were screaming. After this, we use the resistance bands to work the muscles in my neck. Laura is no longer using the palm of her hand to push my head forward. She is now using the yellow resistance band for this portion of my neck exercises. The yellow resistance band is the one with the least amount of resistance and I am struggling with this exercise. I find it much more difficult to use the resistance band during this portion of my neck exercise, but, with time, and as this muscle increases in strength, these exercises will become easier. My workouts with Laura usually last about an hour, and by the time we completed all my exercises, my one hour workout seemed to have only lasted minutes. It surprises me how fast my time goes while I'm doing my workout with Laura. I guess I'm so busy that the old adage that says "time flies when you're having fun" can be considered a true statement.
In this week's video, I go over the exciting news that was released on Monday, December 3, 2018 on the Cure SMA website. The FDA has accepted Avexis Pharmaceutical’s Biologics Licensing Application, (BLA), regarding their drug AVXS-101. This is the first step in the possible approval to bring AVXS-101 to treatment status for those of us who suffer from SMA. Not only did the FDA approve Avexis Pharmaceutical’s BLA, they also gave Avexis Pharmaceuticals Priority Review designation. The FDA granted Biogen Pharmaceuticals Fast-Track status for their drug Spinraza. Priority Review designation is essentially the same as Fast-Track status. Now, instead of this treatment being available to us between July and August 2019, we can see this treatment becoming available as early as late April to May 2019. Given the positive results that Avexis reported during their clinical trials, I see no reason for the FDA to deny Avexis Pharmaceuticals in their attempts to bring this drug to treatment status. AVXS-101 is now known as ZOLGENSMA. In the description of my video, there is a link to the entire article that was published on the Cure SMA website on Monday, December 3, 2018. Click HERE to view my video, and be sure to click on the link in the description field to view the entire document from Avexis Pharmaceuticals.
I hope that all of you had a fantastic week and I hope that you do something for yourself this upcoming week that will make you a better person. God bless you and I'll see you next Sunday.
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In this week’s video, I discuss the REALITY of what Spinraza and Evrysdi ACTUALLY do for those of us with SMA.
I discuss my thoughts regarding these treatments, and I also discussed how hopeful we should all be with regards to Scholar Rock’s new treatment known as apitegromab.
This potential treatment will be the first of its kind because it will be a muscle targeted therapy, that will be used in combination with Spinraza, and other possible treatments.
Be sure to read Emily's latest article: